Discussions By Condition: Colon conditions

Life after a Mobile Cecum, constipation and bloating

I would like to share my medical story that started with a wrong diagnosis that led to the truth! So I was in fact very blessed by my wrong diagnosis.Several months ago I went to visit a gastroenterologist specialist as I had been suffering from intermittent constipation which was chronic when I had it, and happening with much more regularity. I could never understand the reason why as I ate a healthy diet with lots of fruits, veggies and fibre that would send normal constitutions to the bathroom several times a day. All I knew was that the food I was eating was not leaving my body and I was always uncomfortable with severe bloating. I had tried to loose some excess weight for years and never succeeded – I am about 10 lbs overweight.The specialist offered to do a colonoscopy (the very thing I had dreaded for years and had put off looking into my problem as a result of) I had accompanied my mum for a colonoscopy several years ago when I lived in the UK and they had to stop it as she was screaming in pain – no sedation there. So when the specialist told me I would have a general anaesthetic for the procedure I eagerly agreed (I now live in USA).After the colonoscopy the specialist showed me a color photo of what he believed was a large cyst pressing into the end of my colon near the cecum. All you could see was an impression as it was on the outside pressing in. Within a week I was sent for a CT scan of my abdomen and colon.No cyst could be found, but what they did find was that my colon was the wrong way round with my cecum and appendix in the upper left hand quarter of my abdomen. Apparently I had a MOBILE CECUM and the whole of my ascending colon was not adhered to my abdomen (apparently a genetic condition that I was born with) So for 54 years I have lived with a colon that has a mind of its own and moves freely around my abdomen – and sometimes not so freely in the times when I had acute constipation – which was happening more and more. My colon was “kinked” often but had not twisted. The specialist told me it was rare to find this condition in an adult other than when it presented as a twisted bowel when you are rushed to the emergency room in danger for your life. The illusive cyst that I was originally diagnosed with turned out to probably have been my kidney – as my colon had floated off to that part of my body on the day of the colonoscopy and was pressing into my kidney– had that not happened I would never have been sent for a CT Scan – so you see sometimes wrong diagnosis can lead to the truth! I also went for a barium enema to confirm exactly where the cecum was – not a pleasant procedure as it took over two hours to find my cecum as it was choosing to hide on that particular day!The colonoscopy did not uncover the mobile cecum!!Anyway I was sent to see a surgeon who suggested two options. Either the removal (re-section) of the ascending colon or a cecopexy – which would adhere the floating colon to the abdomen wall. He recommended the cecopexy but the gastroenterologist recommended the re-section/removal of the ascending colon as he thought it was too floppy and long to adhere to the abdomen. I went for a second opinion and that surgeon too recommended the cecopexy as it was less invasive and could also be later changed to a re-section if it was unsuccessful. They also wanted to remove my gallbladder as I had gallstones. I started doing a lot of research and was confused about what I should do. I decided that I would hold on to my gallbladder for the time being as I didn’t want that removed at the same time as potentially my ascending colon. I was scheduled to go for the re-section based on my gastroenterologist’s recommendation as he said the cecopexy often failed and came unstuck again with the risk of a twisted bowel. I soon realized that my decision for the surgery was based on fear of “what might happen in the future”. I am a lady of faith and decided that my life would not be based on fear of the unknown.On the day of the surgery I asked the surgeon to do what he felt was the best solution for me based on what he could see once inside with a camera. I asked him to stitch it down if the colon was viable and to re-section if it was floppy and worn out!!He performed a cecopexy and showed me the photos of the surgery! He said it was a long and arduous operation as the colon was extra long – he started tacking it just below my liver and went all the way down to my pubic bone – there was no space to tack down the cecum so it still remains unattached. The surgery took three hours and he was happy with the outcome.That was ten days ago and by the fifth day I was having normal bowel movements several times a day. The surgeon apologized for the bloat in my abdomen after the gas of the laparoscopic surgery – I said what bloat!!! My stomach was less than half the size than it had been prior to the surgery!!I am now doing well with regular bowel movements that for the first time in many years are no effort – what a relief – and the bloat has all but gone. I now feel that what I eat is leaving my body instead of turning into stale toxic waste. The pain from the internal stitches were sore for about a week and are still uncomfortable and I am not allowed to lift anything for six weeks and will be off work until mid September, but I believe it will be worth it.So the lesson here is don’t always think that a wrong diagnosis is to your detriment – in my case it was part of the journey to finding the truth.I look forward to being able to run again without holding my stomach – I have done that instinctively all my life!! I was also sick every day of my life until I was ten – which I now know is a huge symptom pointing to this defect in the colon when you are a baby or young child. I also had strange fluttering sensations in my belly often when I lay down at night – I was convinced I had an alien invasion of parasites and often de-toxed – it was like the feeling I had in the early days of pregnancy when you felt a flutter of movement! So I guess the fluttering feelings this time round was my colon on the move looking for a place to settle!!I know that this is quite a rare condition and difficult to diagnose but maybe even just one of you out there has had similar experiences and this might help!!

13 Replies:

Interesting post. I have been having abd pain with severe bloating and "gas like" pains for about a year....also pain in right upper quad, rt shoulder and some indigestion and nausea. I had a HIDA scan and gall bladder US which were negative. then I saw a GI specialist and had a EGD and colonscopy which also were normal.. The symptoms persisted and my doctor and I decided that I should see a surgeon and have my gall bladder removed. So, I did that 2 days ago. Had a laparoscopic cholecystectomy. While the surgeon was in there he said he saw a part of my colon (the cecum) that was loose and not adhered to the abd wall. And that if I experienced cramping in the right lower quad to let him know bc that loop of colon could get twisted and cause severe problems. Now im wondering if that was my problem all along and not the gallbladder. but he did say my gallbladder was diseased and needed to come out. So....after reading your post....i was intrigued...any thoughts????

Thanks for your interesting reply!!I too had gallbladder problems - stones - but I managed to keep them under control through diet over the years and was not persuaded to have mine removed which the surgeon and gastroenterologist wanted to do at the same time as the cecopexy.I also had this sneaky suspicion that the gallbladder/liver had to have been under pressure due to the mobility of my colon as I was regularly constipated and bloated. I have been doing a liver cleansing plan since a few weeks before surgery(check out the book by Dr. Sandra Cabot - The Liver Cleansing Diet). A lot of the bloat I had around my abdomen has now almost gone - probably a combination of the liver cleansing diet and the surgery!As posted in my note - the colonoscopy did not uncover my mobile cecum only the CT scan did and the barium enema - although I am not sure how much additional information that 2 hour barium enema nightmare added to the equation!! The pain in the lower right quadrant can happen as the ascending colon is tugged off and bent in the opposite direction. I often had sharp pain there - and thought occasionally I had appendicitis (that's funny as my appendix was off at the upper left hand side!!) That particular pain never lasted long with me so I never had it investigated but it did happen quite often.If your surgeon saw that your cecum was unattached during the surgery it is worth requesting a CT scan to find out your answer!! Google mobile cecum and cecal volvulus to find out more about this strange problem that is not very common in adults. I just can't believe the difference in my digestive system only 12 days after surgery! I would love to hear about life after your gallbladder! I thought life without a gallbladder and ascending colon (if that was the way the surgery ended up going) would not be a lot of joy!

Im a 28 year old female and 10 days ago i had an ilio colectomy due to cecal volvulus. Id never even heard of the condition. Ive had pain for the past 8 years, chronic IBS like symptoms cramping swellng only this year it suddenly worsened. I began to vomit persistently. I visited accident and emergency about 4 times in the last 3 years when the pain became too much to bear and was never given any scans or diagnosis, IBS i was told IBS.Now two weeks ago i have another attack and plot myself back up at a&e, after 24 hours with no improvement they finally do a CT scan and see that my bowel is completely twisted. So i had emergency surgery to remove 8.5cm of my bowel and im left with a scar of around 6cm :( The recovery from my op has been slow given my age, so painful and ive now got an infection.Eating is painful, burning sensations and obviously swelling.Has anyone got any light to shed on when the pain will cease?? Itd be nice to hear from someone who has gone through the same.

Hi RachelI am so very sorry to read your post as I know that would likely have been the outcome for me at some point down the road had I not been successfully diagnosed. Because few people know about this condition it is not something that is commonly looked for - that is why I felt I wanted to leave this post in case it helped even one person to ask for a CT scan if they had any inclination that they might have this problem.I hope someone can reply to the specific question you have regarding recovery as my surgery was obviously not as severe as yours. Even in my case it took a while to recover - even although my digestion returned to normal the pain from the surgery lasted almost two months.I also had another complication in that I was wakening up through the night gasping for breath and about three weeks after surgery I couldn't even exercise - they suspected heart failure and I went for several tests like CT scan for blood clots, echocardiogram etc. I eventually ended up in ER and they then did a cardiac catheterization and discovered I have cardiomyopathy!! An enlarged heart - again probably a hereditary condition that had lain dormant until the stress of the surgery! I am not happy to learn this but again it is a dangerous condition and better to know and take care of it than suddenly have a heart attack!!I was off my work for four months and am still only working part time - now five months since my surgery.Had the heart complication not appeared I would probably have been back at work at around 6-8 weeks after the cecopexy which stitched my colon back to my abdoment.So Rachel hang on in there - it will probably take you at least 8 weeks to recover - the first few weeks will be the worst - be sure and not carry anything over a few pounds in weight during that time. The part of the colon that was removed sounds about the same amount as they were going to remove of mine had they gone in and found that the stitching down was not feasible - I was assured that I would not miss that amount of colon - so I hope you eventually won't miss yours either and fully recover. A twisted colon is very serious and I am glad they eventually realized what it was - and such a tragic thing that they missed it for so long especially as you had been symptomatic on previoius visits to the emergency room.Please post and let me know how you are or send me a private message and I will be glad to send you an email.

Hi RachelI am so very sorry to read your post as I know that would likely have been the outcome for me at some point down the road had I not been successfully diagnosed. Because few people know about this condition it is not something that is commonly looked for - that is why I felt I wanted to leave this post in case it helped even one person to ask for a CT scan if they had any inclination that they might have this problem.I hope someone can reply to the specific question you have regarding recovery as my surgery was obviously not as severe as yours. Even in my case it took a while to recover - even although my digestion returned to normal the pain from the surgery lasted almost two months.I also had another complication in that I was wakening up through the night gasping for breath and about three weeks after surgery I couldn't even exercise - they suspected heart failure and I went for several tests like CT scan for blood clots, echocardiogram etc. I eventually ended up in ER and they then did a cardiac catheterization and discovered I have cardiomyopathy!! An enlarged heart - again probably a hereditary condition that had lain dormant until the stress of the surgery! I am not happy to learn this but again it is a dangerous condition and better to know and take care of it than suddenly have a heart attack!!I was off my work for four months and am still only working part time - now five months since my surgery.Had the heart complication not appeared I would probably have been back at work at around 6-8 weeks after the cecopexy which stitched my colon back to my abdoment.So Rachel hang on in there - it will probably take you at least 8 weeks to recover - the first few weeks will be the worst - be sure and not carry anything over a few pounds in weight during that time. The part of the colon that was removed sounds about the same amount as they were going to remove of mine had they gone in and found that the stitching down was not feasible - I was assured that I would not miss that amount of colon - so I hope you eventually won't miss yours either and fully recover. A twisted colon is very serious and I am glad they eventually realized what it was - and such a tragic thing that they missed it for so long especially as you had been symptomatic on previoius visits to the emergency room.Please post and let me know how you are or send me a private message and I will be glad to send you an email. Hello Geemel,I am so thrilled for you that you have had your case resolved. What a joy that must be! I am also really excited I found this thread. I have been suffering from a ridiculous amount of pain the past 10 years, been hospitalized numerous times for near-fatal dehydration (literally gallons of vomit that made me shed up to 25 lbs. in half a day) and just insane amounts of pain. I've been wrongly diagnosed many times with many things including "stress," but I won't get into all of that now. The main thing I am writing about is I believe I have Mobile Cecum Syndrome. Reviewing my medical records, I found in my first surgery (an appendectomy with a healthy appendix) that the cecum and appendix were in the Upper right quadrant, not the lower. Also, extensive peritoneal adhesions were found--I suspect my body has been trying to "anchor" the cecum by building scar tissue. And now I also have severe Gastroparesis--which I found out may be caused by a mobile cecum. But I am having a heck of a time finding a doctor who has heard of this condition, let alone knows anything about surgical options. My body says I can't live this way much longer. I am scared and I hurt soo bad every day. I cannot even tolerate solid food. So, can you maybe please pass me the name of your doctor? I live in the midwest, but I will go anywhere to get the help I need. And who could complain about getting healed in paradise? Anyway, any info, even the name of the hospital would be so helpful for me. You may be one of the keys to saving my life. Thanks So Much in advance for your time and input. I hope life continues to bring you blessings. --Perigee

Hello Geemel,I am so thrilled for you that you have had your case resolved. What a joy that must be! I am also really excited I found this thread. I have been suffering from a ridiculous amount of pain the past 10 years, been hospitalized numerous times for near-fatal dehydration (literally gallons of vomit that made me shed up to 25 lbs. in half a day) and just insane amounts of pain. I've been wrongly diagnosed many times with many things including "stress," but I won't get into all of that now. The main thing I am writing about is I believe I have Mobile Cecum Syndrome. Reviewing my medical records, I found in my first surgery (an appendectomy with a healthy appendix) that the cecum and appendix were in the Upper right quadrant, not the lower. Also, extensive peritoneal adhesions were found--I suspect my body has been trying to "anchor" the cecum by building scar tissue. And now I also have severe Gastroparesis--which I found out may be caused by a mobile cecum. But I am having a heck of a time finding a doctor who has heard of this condition, let alone knows anything about surgical options. My body says I can't live this way much longer. I am scared and I hurt soo bad every day. I cannot even tolerate solid food. So, can you maybe please pass me the name of your doctor? I live in the midwest, but I will go anywhere to get the help I need. And who could complain about getting healed in paradise? Anyway, any info, even the name of the hospital would be so helpful for me. You may be one of the keys to saving my life. Thanks So Much in advance for your time and input. I hope life continues to bring you blessings. --PerigeeAloha Perigee!I am so sorry to hear about your continuing trials and know now that I was indeed fortunate to have my case diagnosed and then have a surgeon who was willing and knowledgeable enough to perform the surgery! I don't know if I am allowed to post the name of the doctor (rules of the blog??) but I have sent you a friend request - I am not sure if we can send each other a private message. If you can't figure out how to do that post again and I will respond!I am continuing to be fine - now back at work full time. I found out I was gluten intolerant a couple of months ago and after I cut out the gluten from my diet my fatigue left almost instantly and undiagnosed pain in my body also left within a few days - I could not believe the bad affect that gluten was having on my body.Look forward to you hearing from you.

Aloha Perigee!I am so sorry to hear about your continuing trials and know now that I was indeed fortunate to have my case diagnosed and then have a surgeon who was willing and knowledgeable enough to perform the surgery! I don't know if I am allowed to post the name of the doctor (rules of the blog??) but I have sent you a friend request - I am not sure if we can send each other a private message. If you can't figure out how to do that post again and I will respond!I am continuing to be fine - now back at work full time. I found out I was gluten intolerant a couple of months ago and after I cut out the gluten from my diet my fatigue left almost instantly and undiagnosed pain in my body also left within a few days - I could not believe the bad affect that gluten was having on my body.Look forward to you hearing from you.Wow, Geemel, you are A-maz-ing. Thanks for the quick response! I think I have properly accepted your friend request, but I may be confused. I couldn't figure out how to send a private message, but I guess you know how? I can't express how relieved I feel right now knowing that soon I may actually get the help I need! Its just a fantastic thing. I am so glad you've gotten back to work and living your life. Kudos on eliminating gluten! It can wreak havoc on the senses of those sensitive to it. It truly is amazing what our diet does for us and to us! Hope your day is delightful....I will look forward to checking in later to see if the private message works out. Thanks So Much!!! ~Perigee~

Hello Geemel,Wow!! You are A-maz-ing!!! Thanks for the quick response. I am not sure if I have properly accepted your friend request--maybe you can tell? And I honestly have no idea how to initiate a private message on here. I cannot tell you how relieved I am to know I may finally have found the answers, and someone who can give me the evaluation I need so desperately! This is just wonderful. So, I will look forward to checking in later to see if the message works out. I am seriously so excited! Thank You So Much! Kudos to you on finding the gluten intolerance--I know it really wreaks havoc on those with sensitivities. It can be a tough dietary adjustment, but when the benefits are as great as what you are experiencing it certainly makes it easier to eliminate! And back to work full-time? Yes! That's awesome.I hope this message reaches you happy and well. I guess I'll hear from you soon!! Thanks Ever So Much, Kim

Hello Geemel,Wow!! You are A-maz-ing!!! Thanks for the quick response. I am not sure if I have properly accepted your friend request--maybe you can tell? And I honestly have no idea how to initiate a private message on here. I cannot tell you how relieved I am to know I may finally have found the answers, and someone who can give me the evaluation I need so desperately! This is just wonderful. So, I will look forward to checking in later to see if the message works out. I am seriously so excited! Thank You So Much! Kudos to you on finding the gluten intolerance--I know it really wreaks havoc on those with sensitivities. It can be a tough dietary adjustment, but when the benefits are as great as what you are experiencing it certainly makes it easier to eliminate! And back to work full-time? Yes! That's awesome.I hope this message reaches you happy and well. I guess I'll hear from you soon!! Thanks Ever So Much, KimAloha PerigeeThanks for your kind reply. I too can't figure out the private messaging on this site - you are supposed to be able to send an email but I haven't figured it out yet!! I have just set up an email address that you can reach me at. If you write to me there I will reply and give you my normal email address. It is geemel4848@gmail.comLook forward to hearing from you. I remember how frustrated I was when I found out I had this condition and could hardly find anything about it on line and posted in case someone else was in the same place I was in!I was never able to talk/write to anyone who had experienced the same thing and I know it would have helped so I hope I can in some way help you.

I would like to share my medical story that started with a wrong diagnosis that led to the truth! So I was in fact very blessed by my wrong diagnosis.Several months ago I went to visit a gastroenterologist specialist as I had been suffering from intermittent constipation which was chronic when I had it, and happening with much more regularity. I could never understand the reason why as I ate a healthy diet with lots of fruits, veggies and fibre that would send normal constitutions to the bathroom several times a day. All I knew was that the food I was eating was not leaving my body and I was always uncomfortable with severe bloating. I had tried to loose some excess weight for years and never succeeded – I am about 10 lbs overweight.The specialist offered to do a colonoscopy (the very thing I had dreaded for years and had put off looking into my problem as a result of) I had accompanied my mum for a colonoscopy several years ago when I lived in the UK and they had to stop it as she was screaming in pain – no sedation there. So when the specialist told me I would have a general anaesthetic for the procedure I eagerly agreed (I now live in USA).After the colonoscopy the specialist showed me a color photo of what he believed was a large cyst pressing into the end of my colon near the cecum. All you could see was an impression as it was on the outside pressing in. Within a week I was sent for a CT scan of my abdomen and colon.No cyst could be found, but what they did find was that my colon was the wrong way round with my cecum and appendix in the upper left hand quarter of my abdomen. Apparently I had a MOBILE CECUM and the whole of my ascending colon was not adhered to my abdomen (apparently a genetic condition that I was born with) So for 54 years I have lived with a colon that has a mind of its own and moves freely around my abdomen – and sometimes not so freely in the times when I had acute constipation – which was happening more and more. My colon was “kinked” often but had not twisted. The specialist told me it was rare to find this condition in an adult other than when it presented as a twisted bowel when you are rushed to the emergency room in danger for your life. The illusive cyst that I was originally diagnosed with turned out to probably have been my kidney – as my colon had floated off to that part of my body on the day of the colonoscopy and was pressing into my kidney– had that not happened I would never have been sent for a CT Scan – so you see sometimes wrong diagnosis can lead to the truth! I also went for a barium enema to confirm exactly where the cecum was – not a pleasant procedure as it took over two hours to find my cecum as it was choosing to hide on that particular day!The colonoscopy did not uncover the mobile cecum!!Anyway I was sent to see a surgeon who suggested two options. Either the removal (re-section) of the ascending colon or a cecopexy – which would adhere the floating colon to the abdomen wall. He recommended the cecopexy but the gastroenterologist recommended the re-section/removal of the ascending colon as he thought it was too floppy and long to adhere to the abdomen. I went for a second opinion and that surgeon too recommended the cecopexy as it was less invasive and could also be later changed to a re-section if it was unsuccessful. They also wanted to remove my gallbladder as I had gallstones. I started doing a lot of research and was confused about what I should do. I decided that I would hold on to my gallbladder for the time being as I didn’t want that removed at the same time as potentially my ascending colon. I was scheduled to go for the re-section based on my gastroenterologist’s recommendation as he said the cecopexy often failed and came unstuck again with the risk of a twisted bowel. I soon realized that my decision for the surgery was based on fear of “what might happen in the future”. I am a lady of faith and decided that my life would not be based on fear of the unknown.On the day of the surgery I asked the surgeon to do what he felt was the best solution for me based on what he could see once inside with a camera. I asked him to stitch it down if the colon was viable and to re-section if it was floppy and worn out!!He performed a cecopexy and showed me the photos of the surgery! He said it was a long and arduous operation as the colon was extra long – he started tacking it just below my liver and went all the way down to my pubic bone – there was no space to tack down the cecum so it still remains unattached. The surgery took three hours and he was happy with the outcome.That was ten days ago and by the fifth day I was having normal bowel movements several times a day. The surgeon apologized for the bloat in my abdomen after the gas of the laparoscopic surgery – I said what bloat!!! My stomach was less than half the size than it had been prior to the surgery!!I am now doing well with regular bowel movements that for the first time in many years are no effort – what a relief – and the bloat has all but gone. I now feel that what I eat is leaving my body instead of turning into stale toxic waste. The pain from the internal stitches were sore for about a week and are still uncomfortable and I am not allowed to lift anything for six weeks and will be off work until mid September, but I believe it will be worth it.So the lesson here is don’t always think that a wrong diagnosis is to your detriment – in my case it was part of the journey to finding the truth.I look forward to being able to run again without holding my stomach – I have done that instinctively all my life!! I was also sick every day of my life until I was ten – which I now know is a huge symptom pointing to this defect in the colon when you are a baby or young child. I also had strange fluttering sensations in my belly often when I lay down at night – I was convinced I had an alien invasion of parasites and often de-toxed – it was like the feeling I had in the early days of pregnancy when you felt a flutter of movement! So I guess the fluttering feelings this time round was my colon on the move looking for a place to settle!!I know that this is quite a rare condition and difficult to diagnose but maybe even just one of you out there has had similar experiences and this might help!!I just had the same surgery,which was not what I went into surgery for in the first place. I went in for to get my Afferent Loop rerouted and when they opened me up they had to make sense of my instestines first. Then they found my cecum up under neath my left ribcage. After the cecopexy was completed the other didn't take long. Surgery lasted 4 hours. Unlike you though, I am not having regular bowel movements yet, or passing gas like I should be. My lower right side is still extremely sore and so is my left ribcage. The incision is doing great. I wish that I could get my bowels to work better. I don't need the weight loss and it is coming off fast. 7 days out of surgery with a 13 lb loss. Any suggestions?????

I know you wrote this in 2009 but it is exactly what I am dealing with. I would be ever so grateful if you could tell me what Dr was able to help you. I have been very sick and do not want the wrong surgery. I know it is genetic as the entire side of my Dad's family has dealt with issues. If you get this please write back. my email is yourhometowne@gmail.com . I own a community paper in Burnt Hills NY , not a weirdo. You can google me. Cheryll Hill , Your Hometowne